Pneumonia

     Well, that about sums it up. For the past month, we have been in the hospital. That is why we have not had any time to update everyone on how Charlotte is doing. After a long stretch of Charlotte's health improving, she began vomiting daily. We assumed she caught a little virus and didn't think much of it at first. However, Charlotte was due for her 6 month vaccines. She did not tolerate her vaccines well. They literally blew her vomiting out of the water. She vomited for days, and eventually swallowed it into her lungs. So, she was hospitalized. Charlotte has a complicated medical history right now due to being born so prematurely, and so when we enter the hospital, it is always a complicated process. They draw blood labs, and Charlotte doesn't produce red blood cells well. So, they sometimes have to transfuse her to maintain her blood counts. She also requires weekly platelet transfusions. Well, one day while in the hospital they gave her red blood cells and platelets on the same day but did not give her a diuretic due to her low potassium from vomiting. This caused Charlotte to swell up with all the fluid, and her lungs partially collapsed due to the pressure. David and I left for a half hour to have dinner across the street and came back to see doctors surrounding our daughter who was unresponsive because she was struggling so hard to breathe. To watch your daughter swollen from head to toe and unresponsive to your touch or sound as she struggles to breathe is something that David and I hope to never see again. The feelings we went through are indescribable. They included rage, sadness, fear, exhaustion, anxiety, etc. (We had a long talk with the doctors about how they screwed up big time, we knew it, and assured them that if anything else happened we will take action. Laura's whole family is in the medical field and are well aware of proper medical practices.) So, she was sent to the pediatric intensive care unit and placed on 8L of oxygen. They considered placing her on a CPAP machine, but she was able to tolerate a regular nasal cannula. Thank you, God. We spent several sleepless nights in the PICU where they have one awful recliner in which to "sleep". So, David and I took turns going back and forth to the hospital. Charlotte was able to wean back down to her normal oxygen requirement. The medications cured the pneumonia, removed the fluid, and healed her lungs. After returning home, in less than 12 hours she was vomiting again and back in the hospital for the same thing. We spent another week in the hospital. When we came home again, we couldn't lay Charlotte flat because when she sat back up, she would vomit. So, we had to resort to changing her while sitting up. Changing a child while sitting is something I wish no parent would ever have to do. It's messy and exhausting. Well, then Charlotte got a UTI. One of Charlotte's many diagnoses is called VUR. Vesicoureteral reflux is the backward flow of urine from the bladder into the kidneys. Normally, urine flows from the kidneys through the ureters to the bladder. The muscles of the bladder and ureters, along with the pressure of urine in the bladder, prevent urine from flowing backward through the ureters. VUR allows bacteria, which may be present in the urine in the bladder, to reach the kidneys. This can lead to kidney infection. Upon arriving home from treatment for the UTI, Charlotte got pneumonia again. During our admission, Charlotte had her G tube changed to a J tube in order to stop the aspiration events. This means that the food Charlotte gets through her tube will go into her intestine and be absorbed and not her stomach. Therefore, if she throws up, it will not be formula because there is nothing going into her stomach. This will prevent her lungs from becoming infected. Our lives have consisted of daily phone calls with endless amounts of doctors trying to figure out why she is vomiting, what medications she does or does not need, which medications we can change to improve her vomiting, setting up follow up doctors appointments, etc. 

     Some good things did happen after our hospital stays. They decided they are going to do a simple outpatient procedure to fix Charlotte's kidney reflux which will cure her VUR. (They hadn't intervened before the UTI because they thought her VUR was mild enough to not cause any problems. After we left the NICU, they had recommended that we use an antibiotic for 1 year to prevent UTIs.) After the surgery, Charlotte will no longer need to be on an antibiotic to prevent UTIs. Antibiotics can cause stomach problems, and so we are happy that she will most likely not need them if the surgery is successful. Also, Charlotte no longer has hypoaldosteronism. This is a long word which means her adrenal glands didn't produce a certain hormone. She was on a steroid to help with this diagnosis. Well, as she has grown her adrenal glands have healed and work just fine now. So, we have stopped her steroid!! One more medication is gone! Steroids can cause stomach problems also, and so this means we are heading in another good direction for her stomach!

     Charlotte is 12 and a half pounds now! She is almost 9 months old, 6 adjusted to her actual due date. She has a jumperoo that she loves to play in. At first her feet didn't touch the floor, but she has grown into it, and now she loves to jump up and down in it! Also, Charlotte loves standing up and is able to sit on her own by propping herself with her arms. Developmentally she is right on track. We have decided to let her enter her first Spartan kids race soon.

     The experiences that David and I have been through have caused us to truly cherish every day with our daughter in a way that many parents can not understand. We have had so many days where we feel like we have almost lost her. Each time she recovers and gives us that big Charlotte grin for the first time, we take a huge sigh of relief and hold on to her a little tighter. We love her a little harder. The big life lesson we have leaned is: Tomorrow is never guaranteed. We must cherish every day and live it to the fullest!